I have never spent much time in the healthcare system; being healthy I saw a primary care physician every few years and called it good. I never really noticed the patient/doctor relationship until being hospitalized in 2014.
After a 2 month stay from many complications of being diagnosed with an aneurysm and a collapsed valve I ended up with a chronic hospital infection that now lives on my graft, valve and sternal wires. Upon discussing a friend’s experience who also acquired a chronic infection, something really stood out. Neither of us were aware how serious the infection was until many months later when we were set up with an infectious disease doctor. I began to ask others who were living with chronic diseases and the a-ha moment finally came. Was this a conspiracy among physicians to keep their patients in the dark? Was the general public unaware of what they are living with after seeing a doctor? Were we just victims of poor bedside manner?
The physician-patient relationship is a complex one especially if we find a physician we are happy with. In the instance where they become your physician for life the relationship builds with trust and teamwork. This is one that most of us with chronic conditions hold. However, physicians, surgeons, and other hospital professionals are a fleeting relationship at best, so why are they not forthcoming on diagnoses, conditions, and care at time?
This has actually been a discussion for debate over the years. One of the basic principles of medicine is “do no harm”. How a physician takes this to heart may make a difference. Of course they want to heal us and not maliciously make us worse, but does the “do no harm” edict mean a patients mental well-being? If a patient is recovering and in a weakened state would it hurt them and hinders healing if you told them we found cancer? Many physicians think this is likely so. However, there may be other circumstances for these actions that may seem neglectful.
We are often times guilty of not being honest with our physicians. “ I just noticed this rash” really means you had it for weeks but now it bothers you. “I exercise regularly” likely means you walk to the mailbox every day. Along with this our physicians may have just come from a meeting where the hospital tells them “our infection rates are sky high” and they are told to downplay how serious it is to a patient. True and honest medicine is a tango at best.
Why do doctors Hold Back Bad News?
There are several theories on why doctors do not want to and are bad on explaining bad news or the seriousness of a problem. One may be there are not trained in medical school on good communication. Medicine is a singular sport and teamwork is not pressed. Doctors often feel colleagues and fellow students want to “steal” techniques. Another may be constrictions on time. With all the computer charting and charting regulations they spend more time worrying about have they done the legal part correctly. It also is obvious that in a hospital setting long term relationships cannot be built. A doctor, NP, or surgeon only sees you briefly and for a short time. This does not allow them to get to know a patient or family and lack of knowledge in do these people handle bad news well. Last but not least is a doctor like to have answers. If there are lack of therapies to treat the condition or disease they may not feel great about telling you “hey you are out if options and my hands are tied”.
Although doctors’ obligations of fidelity and promise keeping mean that they should be truthful to their patients regarding their conditions, sometimes, the desire to ‘protect patients from harm’ makes doctors less truthful with patients. Despite the argument that the motivation behind this is often well meant, “a conspiracy of silence usually results in a heightened state of fear, anxiety and confusion, not one of calm and equanimity.” It is more likely that misguided evasion or frank dishonesty may add considerably to a patient’s distress and prolong the necessary adjustment process thereby causing harm and violating the ethical principle of non-maleficence. The doctor-patient relationship, at its very essence, relies on honest communication. Lying to or misleading patients undermines the veracity of the individual doctor and casts serious doubt on the trustworthiness of the medical profession as a whole.
If I had known (in my case) how serious the Pseudomonas infection could be I would have been more eager to understand how the pathogen works and what could I do for myself to help offset side effects from the high dose Cipro that is taken for life. In the hospital all I was told was the infection was gone and a month of home infusion therapy would ensure that. Assuming (oh how we are wrong with that word) that all was done and my life would be normal, it was not until a month later sitting in an Infectious Disease doctor’s office, and wondering why, that I was finally told this infection was permanent. It took 4 visits to finally learn how it is permanent, and 2 years later was finally told (by much begging for the truth) that the Pseudomonas will work its way around the high dose I am on, he just does not know when, and I am out of options.
Some of us want the truth so we can adjust our lives to it. Physicians please! Get to know your patients enough to know if they can handle it or not.